Sillycat1957

Tomorrow is #19 unless the onc wants to send me for scans. All of a sudden yesterday when I woke up my hip was painful when I walk. Doesn’t hurt otherwise. I’m thinking it’s overuse from walking or wearing heels 👠 for the first time in over a year on Monday.  My fear is this is now in my bones. Tired of worrying about every ache. 

Barb..
sorry to hear of a new pain ..  there is nothing to fear except fear itself 
#21 for me tomorrow .. 

Rower ..  good information about naltrexone  ..  here is the link to the page about it.   https://www.lowdosenaltrexone.org/    I have been taking it for 3 years.  I also take 900 mgs of this a day Tru Niagen, ask you naturopath.
Georgia .. sorry to about your husbands issues. When I got radiation to my chest they went from the front to the back and I was red like a sunburn on my chest and my back for awhile after treatment. The effects of radiation should improve with time, I put on some Aloe vera  and whole plant CBD cream. If your going to look for a naturopathic doctor you should look for one that is naturopathic onclolgist fabno certified to work with cancer. This is a link to a few in your area  http://www.fabno.org/membership.html.   I believe that whole plant CBD tincture works very well for pain and should help your husband. I know 4 of my nurses and my onc use it for pain and to help sleep. 
Sillycat  ...glad your back on the Durva track
What did the hippy say while being evicted?    Namaste
 

Congrats Roseann on finishing #11 and you are so correct, Durvalumab and it's pesky little side effects has a way of playing hop scotch with our calendar. I too gave up charting it out to #26. And very good that you dodged another "itis" on your eyes. Drops and wipes are very doable. I had a friend who had collagen plugs inserted into her tear ducts because of the hassle of using eye drops. She chose Collagen as it's a temporary measure and will dissolve on it's own in a couple of months, she can then chose to have a more permanent plug if it works for her. I'm in your camp, give me the drops and wipes. I know Tomm mentioned in previous posts that he was receiving IV Vit C prior to Durvalumab but was told to stop VIT C infusions until Durvalumab treatment is over. I have a Medical Marijuana Card but find the availability of products limiting and expensive, so I have yet to utilize it. 
Opal, Barb and Michelle
Unfortunately, I don't have access to a LiveStrong program but I'm hoping being off the Durvalumab and continuing with my biking will get some extra pounds off. Thirty pounds is a lot of extra weight to put on in a short period of time....it does stress the body. I've been a practitioner of Tai Chi (Chuan Style) and Yoga for the past 20 years. I find that Tai Chi is like an internal massage where as my Yoga ensures my core strength. Thanks for the information on Low Dose Naltrexone.....more questions for my doc.
Carrying on......DFK
 

DFK, Wonderful news! My heart is happy for you! A long and winding sometimes treacherous road you have traveled my friend, but you did it  Congratulations 🏆
I finally had infusion #11 today, my port was a little wonky, but my nurse got it going Phew! I hate when that happens, but I'll take some pumping of my port over a needle stick any day. Labs are good, magnesium a little low, but nothing a little or a lot of greens won't fix in my opinion. My eye appointment went well, seems I have yet another side effect of Durva, Dry Eyes, thank goodness it is not Uveitis. Just need to use those eye drops for dry eyes and some wipes because my eyes get some crusty stuff between my eyelashes that I guess only the eye doctor saw, who knew! But I'll take that, the alternative, if it persists is some kind of plugs in my tear ducts to keep the tears in my eyes. That's not happening!
Also saw a Naturopathic doctor, he wants me to have Vitamin C infusions, Oncologist said No, when I'm done with Tx ok, because of antioxidants, makes sense, plus not covered by medicare. I have paperwork for a medical marijuana card. I spoke to my Onc about that too, she feels I wouldn't benefit from the tincture at this point, because I am managing my pain and sleep with non narcotics and am doing well, she feels it is a benefit for cancer patients who are not in as good as shape as I am, she said if I felt like getting some medicinal marijuana to help with my appetite and anxiety it would totally be my call, but it is expensive, I am on SSDI that is my only source of income so I think I may have to just forget about that. Here in CT it's $100.00 per year just for the card. Oh well. 
However, my cancer pays for a 12 week membership at our local YMCA it's called Living Strong and I get to utilize all the programs they have, it starts on Feb 11th I have been waiting since October for this to start! I have always been a Yoga Mama, so I am going to try Tai Chi, I am so excited about it yay me!
Grahame, looking forward to seeing you in our club!
Have a good nite all 
Roseann
 
 
 

Hi Barb,
Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁
Hi Michelle,
I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more.  I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100%
Wishing everyone a great night,
Roseann
 

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Hi Opal. My doc says no. The nutritionist agrees that it does cause weight gain as everyone in the practice on it is complaining about gaining weight. Que sera sera

Hi Rosann
Ask your Naturopathic Doc about the LDN Naltrexone, it’s by prescription at a compounding pharmacy (mail order at Belmar Pharmacy in Colorado). There is a LDN Naltrexone website that talks about the cancer benefits. In addition there is a small published study on LDN and lung cancer in PubMed. 

Naltrexone is traditionally used to detox from opiates at much higher doses (50mg). It was discovered in sub clinical doses up to 4.5mg there are reportedly unexpected benefits to reduce cancer pain, fibromyalgia pain, improve sleep and increase endorphins (which is theoretically hard for cancer cells to metastasize). 
 
I got a second opinion from another Integrated MD at the University of Iowa which confirmed the LDN recommendation. Then I consulted with my pharmacist who surprised me when he said that other Kansas University patients with stage IV brain and pancreatic cancers receive LDN post chemo. Go figure.  
 
My oncologist who didn’t buy into any of the “hippie protocol” was noncommittal, only after my out of whack liver enzymes significantly reduced (way faster than anticipated) did he get curious.  My Integrated MD said LDN reduces inflammation.  
I’ve been taking LDN for 15 months. Is it working, I don’t know but it isn’t interfering and I have no pain despite a history of bone Mets which no one can explain. 

LDN is starting to make its way into mainstream however since the drug is really old the patent is long over so the pharma company has zero incentive to run any clinical trials.  
Carry on!
Michelle
 

 

 

Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.

Hi Barb,
Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁
Hi Michelle,
I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more.  I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100%
Wishing everyone a great night,
Roseann
 

Hi Barb,
Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁
Hi Michelle,
I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more.  I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100%
Wishing everyone a great night,
Roseann
 

Sillycat-glad you’re doing well. My port gets wonky but at the last infusion a new older nurse said to turn and tilt my head away from the port. The line runs right up into the crease of my neck and she said probably gets a little kink in it. It worked!  And to think nobody else thought of this and it’s been a problem almost every time. 
Now if she has any wisdom about how to stop this weight gain I hope she shares. I eat like a bird and walk miles most nights and still it doesn’t matter. My major complaint about this Durva journey. #19 tomorrow. May 7th is the last and I cannot wait. Enjoy the Y-

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Good Thursday to All,
Crossed the finish line yesterday. Very uneventful #26 infusion.
And to be honest, a little bittersweet. I was saying goodbye to the very people that have carried me for the past 17 months. The same staff who:
taught me about my cancer as I cried and sniffled,
who navigated ALL my appt's in a different city,
who taught me about my Durvalumab,
who laughed at my comedic antics and stories,
who allowed me to slum in a private infusion room for a couple hours with laptop set up while waiting for my drug,
who juggled appointment times so I didn't have to fly in an extra day,
who held my hand during numerous procedures,
who massaged doctors offices so I could see Specialists a little earlier than the usual 4 months waiting time
who kept me up to date in copies and DVD's of my medical records,
(My Pulmonologist) who gave me his personal cell so I could call him instead of flying in for ONE. MORE. APPOINTMENT, ditto for my PCP,
(My Cardiologist) who at first staid and stiff now smiles and gives me a hug when we pass in the hallways. 
(My ENT) who apologized for the long wait but had me diagnosed and fixed within two weeks of our meeting, and who explained in detail how radiation paralyzed my vocal cords, 
(And my Oncologist) who though rarely uttered more than a few words, always smiled at me and shook my hand (18 times) as if meeting me for the 1st time and always told me what my next step would be. I learned to trust this quiet and kind man in my journey, and together with the loving help of all, they have brought me fairly unscathed to NED. I am more than appreciative, I am overwhelmed with my good fortune.
So for each "today", I will do my best to be mindful of my blessings. I'll be sure to post follow-up progress reports. 
Take Care, DFK
 
 
 

DKF
really great news that your NED and treatment is complete, sounds like you had a great team. I want to thank you for posting the good and the not so good of your journey.
 

DFK, welcome to Post Durva Club 👏. You did it!!
Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 
Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 
Also mindful of my blessings,
Opal
 

Hey there Everyone, sounds like all is well in Durva land!
Well Hells bells! Been dealing with a whole lotta lotta personal crap, and just not feelin" it. Just came round to see what's going on round here lots I see 😃
Welcome Grahame! 😃 I had the same cocktail as you Cisplatin/Etoposide Yuk! Eh! Concurrent with 31 daily doses of radiation, then onto Durvalumab after 4 wks rest. I too have a port, would not want it any other way, no siree. Everyone here has lots of great things to offer and will never let you down when you have a question or what not so keep coming back now ya hear!
I had to skip Infusion #11, really upset me, seems I may have fallen into the 1% category of rare side effect of something called Uveitis? Another freaking "itis" that we as cancer patients have come to know all too well, well myself anyway. I have been complaining about my vision for about 2 months now. I was told to try eye drops or artificial tears. Which I would not, because a long time ago, an eye dr had told me never to use them because my eyes would become dependent on them and my eyes wouldn't make tears naturally. If that was true, idk. But I never used them only when I had hangovers LOL! To get the red out! Any way I have an appt to see an Opthamologistt on Wednesday. My eyesight is pretty important.
I sort of remember Charles I think it was having trouble with his eyes at one point? 
DFK you will not be having Twilight to have your Port removed? With my level of anxiety I could not handle that! When I had mine put in I told my surgeon, the way it goes in, is the way it comes out, he said of course! I hope so.
Tomm Congrats on still being NED!
Opal there are a few tough cookies as DFK says at my Cancer Ctr that have their infusion like you did, Nope I could never do that, I have the worse veins and I cringe at the site of needles still. I like your comment about motion lotion, it works.
You can beat me up, but ya can't keep me down!
Roseann
 

Tomm,
Thank you! I did not know this. There are some not too far from me, how about that! I never knew. I will have to see if they are still there, one street I go down all the time, there are no signs posted? Seeing how it's in a crazy town I can understand why. Gonna have to check it out. Next time I pick up my grandkids from school
Have a good night 😃
 

Tomm,
Thanks for the joke, maybe that's my problem I need a wife not a husband LOL!!!! Just kidding, I read the article very interesting. However, I am starting to get a little dismayed about my vision here. I started to complain about it quite awhile ago, I looked back in my side effect journal that I was keeping it started in October. So that's 3 months, maybe that's not too long? I guess I will find out when I see the doctor on Wednesday. I do have arthritis too. Durva has a neat little way of turning that into Rheumatoid arthritis, so I'm hoping that I just have an infection brewing that can be treated with an antibiotic, I am already on 5 mgs of steroids daily for my side effects. I sure as heck do not want any eye pokes!
I wouldn't be against CBD oil, but it's still not legal in my state CT as far as I know. We can get the kind with Hemp but that is useless as far as I am concerned,. I know at one time my Neurologist was going to give me a script for medicinal marijuana for my Epilepsy.  I was a hippie back in the day when things were easy to come by LOL! Now, I would have to depend on a doctor, do they even prescribe CBD oil? I'm not up on that. I am scheduled to see a Naturopathic doctor on Thursday too Yay! 
So with all of that being said, Thanks again for the funnies and the link. Have a great evening
Roseann

#18 is done.  Just tired last night. No other side effects. Tomm glad you’re doing well. Only 6 for you and 8 for me. Have a good weekend all. 

Aw, Opal!  Thank you both!  

Dear dear Opal, 
What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
Take Care, DFK
 

DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished.
I vote you and Rower get together and  take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on.  
Giving thanks,
Opal

Thanks Michelle, those are some sweeeet "atta boy's" you gave me. I am blessed.
My son and his girlfriend, upon hearing of my diagnosis, sent me a care package to see me thru my chemo and radiation. Along with the usual arsenal of comfort potions and lotions, they included a small stuffed rag doll of Wonder Woman. The note in the box simply said, "You are our mom, you got this. Time to pull out all the stops and be the Wonder Woman we have always known you to be". Still brings tears to my eyes.......DFK
P.S.-Wonder Woman is our Bedroom Ceiling Fan Pull......a little bit on the clunky side but the grandkids get a kick out of it.